Wednesday, June 24, 2009

Medical Update,& more basic life issues

So i had to go to the ER two days ago. The pain just became too overwhelming. For those who do not know. I have Neurofibromatosis. I have serveral tumors off of the nerves that are attached to my spine. Well in adddddition to the " everyday" pain i have to experiance, I was experiancing some extream pains in my Kidney area's. And I know Iknow TMI but was also peeing green pee....Ok sorry but thats the las of the TMI. Anyhow...Even with my pain killers and muscle relazers I just could not take the pain anymore. When i went into ER they did a whole battery of tests. CAT scan, EKG, XRAY, Blood test, urine test, etc etc Pumped me full of fluid and meds and then of course- as usual- said. ...we cant see anything out of the ordinary- never mind the tumors- so were gonna send you home. Now I am sure I was prob dehydrated becasue when I got the fluids it totally helped with some of the pain. They said we do however see a fairly large ovarian cyst and think yo should see your doctor in 3-5 days...UMM did i not tell them i was visiting form OUT OF STATE- LIKE THREE TIMES....seeing my doc in 3-5 days is IMPOSSIBLE . So i gave my doc a call to let her know what was going on and now its just about waiting..waiting to get home to OK then going in to see her, hopefully to get on the track to some pain relief. She is amazing, the best doctor I have ever seen. SHe topped everything off by offering to pray for me before i left my last appointment. That was enough for me. NO doctor has ever offered to do that.. They always think they know everything but at the same time tell me...there is nothing w ecan do to help you.
Do you know how fusterating it is to get turned away from a pain clinic?? They told me that they could not help me! my condition is pretty much untreatable according to them and they cant help me....WHATEVER! I have faith that this new doctor will help me, and eventually I will find some relief.....
It is very difficult to live everyday in pain and still try to be the best mother possible, but I am trying everyday tomake it through and do the very best I can.



CA thus far has been fairly uneventful knock on wood! At least for the most part...there is still alot of drama going on at home, with people making assumptions and comments to others that they prob should not be making...just causing more drama and tension. I fel torn between staying here in CA and going back to OK. SImpley because My step dad doesnt want to take any more meds. He has been having sezuires every other day or so ...and I guess he also does not want to go through Kemo agian....part of me understands and respects his choice, butthe other part of me wants to shake him and say...do you know what this will do to your wife, to your grandkids if youlet yourself die? -Does that sound selfish? I am not trying to sound selfish....I just dont want to deal with any mor eloss in this family. ughh. I have some good friends in POnca city- or at least today they are good friends- we will have to see what tomorrow brings....and good friends here in CA....I really cant afford to live on my own in CA...and have my own place in OK... I have vertually no one to BABYSIT in Ponca-everyone works- but in CA i have Family that can help. In OK i can homeschool Cee, but in CA its a bot harder to do, IN CA she can do her modeling , in OK its a little harder and she cant get the work she is used to getting. I have three really good friends in CA Sarah, Jenny and Angelique. In OK all of my good friends are on a yoyo type thing right now and I feel like I have to tip toe arounds everyone...IN OK i have no x-in laws to try and make my life a living hell- IN ponca I am free to do what i want when i want with my children without fear of them being kidnapped or emotionally abused. those are my delima's.....as of right now i plan on staying in Ok for the -well who knows how long- but what happens if my step dad passes away? what do i do then? do i move to ca and help my mom, does she move down with me? how do i help her and maintain my family structure and peace.
I am just tired, tired of being in pain and tired of questioning everythingin life..and the things i dont question someelse does...and makes me feel like i have to answer to them..as if I owe them?

ugh is the word of choice again today....

Tuesday, June 16, 2009

Beach photo's, lifes issues

We went to the beach yesterday. Not something they have in Oklahoma....Its one thing I miss about CA...The beach is so theraputic.....
New stresses:
I dont understand why life has to throw these crazy insane stresses at you...just when you think you got life under controll. Everything used to be so peacful in OK and now I have people who I thougth where friends, saying mean hurtful things, turning their back onme and our friendship....Why am i so disposable to everyone I meet. Why can people so easily turn their backs on me..over stupid things like missunderstandings or stupid little things that should not make a difference. I also feel very USED..like poeple are tollerating me so their lives can be better....I know for some that doesnt make since but its how I feel. As long as I have something to offer, I am so useful to everyone, but as soon as something better comes along, I am thrown out like last weeks trash.
Amongst other things, My friend Jennn is moving to Ponca city, and I love her to death, but the truth is I know shes not moving for me.now where I dont expect her to move " for me" she says i am " part" of the reason she is moving. but in reality I think she moving for Brandon-this guy-see previous blogs. I think if it were not for Brandon...she would not be moving, wether I were here or not....She will be staying with me for a while till she gets her feet on the ground, but I wonder if it will ruin what friendship we have? I pray not. Brandon and I and Brandon's family have been having ...well "issues" .....She( Jennn) will always side with Brandon because she loves him...even if in the end he is wrong...its kinda her duty to side with him right? So if I am- or thought- I was his friend- and yet am so easily disposable to him, then am I the same to her? I dont blame her for taking his side as she belives she is truley in Love with him.....but where does the line get drawn between being someones friend and a friend of someones girlfriend? How much can I take? Why does it always have to be something? What lesson is god trying to teach me? I could get all biblical and say " hes trying to teach me he is my one and only true friend" but then agian I know he did not put us on this earth to walk these battles alone.
That being said part of me wants to stay here and live with Angelique.lol, Go on road trips, and forver be humble toe buddies. -right and all 6 of our kids...we would be well on our way to Crazyville. then agian, I look back at all the things- the good things Ponca city has brought into my life, and while I am still incredibly lonely it is still peaceful. Oddly enough Ponca city has a population of about 26,000 give or take a few hundred-with allth elay offs and all- I have now brought 12 people plus myself and my 2 kids that 14 thats about 3.64% o fthe population that I have increased..if i do my calculations correct....lol But i digress..how can I have so many pepole move to be close to me and yet still be so lonely? I want to feel peacful agian. I also want friends that dont htink im disposable, friends that will stand up for me. Friends that love me despite any character flaws. I just dont know....I think I will pack Angelique up in my suitcase and bring her home with me.....

Wednesday, June 10, 2009

Tuesday, June 9, 2009

A GOOD THING OUT OF A BAD THING

I am interested in starting a Prayer request on tuesdays. Called "TRUST HIM TUESDAYS"-thanks IVY for the name idea. I was thinking of this becasue out of all this APRIL ROSE stuff that has occured, one good thing came to mind...that was he HIS WILL WEDNESDAYS..I think i will start a whole new blog for it....any ideas or suggestions welcomed. I would also love some help getting the site up and running..ideas about graphics and such..im not sure how to do all that, but would love to learn.
Out of all this B and D and April Rose stuff..I think it would be important to remember the good she brought forth, and continue to pray for her as she obviously is in need of prayers and compassion right now. why not take something good out of something bad???
curious to know what everyone thinks

My Birthday, trip to Ca , other stuff...

My birthday was Okay, Uneventful... really. Spent some time with a friend and some with Family. we tookt he kids to Chucky Cheese's = they got way to over stimulated and had a hard time getting them to settle down for the evening.Cecelia and Mikey got me a new outfit for my Birthday and that was nice. The kids for the most part listened for the most part, and I appreciated that.

I have been in alot of pain lately. I hate taking medication all the time, but also hate being in
pain on an everyday basis...so its a lets take the lesser of two evils..right? Ughh. still cant find a decent doctor to help. Neurofibromatosis is either not known enough about or so well known that they know there is no cure so they figure they cant help and well thats that....my tumor that i have in my jaw is huge in comparrasion but its the one in my back that hurts..feels like i have a constant kidney infection. I constantly pray for comfort, i suppsoe the fact that i am able to sit here and type this right now is in itself a gift from god.



Here is a pic of me and my kids.


Mikeys been doing okay. The doctors are lowering his medication. For those who do not know mikey has been hospitalized three times this past 1.5 years for phyciatric reasons. The doctors feel he isprob suffering from Bi-polar but say hes to young to offically diognose it as being that . He also had ODD- oppositional defiant disorder and ADHD..on top of all of that he also has Hyperthioridism. I never wanted to believe in the whole ADHD ODD bi-polar thing..but when your 10-11 year old child is talkining about suicide and putting holes in your walls, breaking windows and has a glazed look in their eyes then not two second later is crying , then another min later is a sweet as can be...it kinda makes you wonder. Most of which of what is going on with himis i think enviormental...he had an very abusive family member who verbally, and emotionally abused him for many many years.....he is really just now begining to heal from that.


As for the hyperthiroidism, we are working on his diet, and other way to help him. He does take med s for it, but i think the proper diet will help more then any meds will. Its interesting to find out the foods he likes and doesnt like...his new fav..Jazmine rice and tofu? -who would have thought right.



Cecelia is starting to show more signs that she might also have Neurofibromatosis. we had prayed that she , as mikey is, would be NF free. Cecelia is starting to show more spots on her tummy and under her arm area. She is mixed with African American so its harder to tell becasue her skin is darker. I suppose when we get home I will have to have her tested. I am not looking foward to that process..even though its a simple blood test, the thought of my daughter having to go through anything like i had to go through when i was a child is just...well frightening.


well that is about all i have in me for now...Still kinda blown away by this whole April Rose thing..trying to be a good christian woman, not judge, but its sad and I am saddened by the pain and lonlelyness this woman must be feeling to have made up something so big. I am sure everyone - well most agree.




Will be back later.



April Rose baby

So i have been following this April Rose blog for some time and am really confused and shocked at the recent heat as well as the developments of this blog. I dont know if it is true or false, to me, although it is disturbing if false, in the end really doesnt matter....I think the question everyone needs to be asking is Why were we brought to this persons blog, My firend s Sarah says everything happens for a reason. I agree, so why were we drawn to this person blog. True or false she offered us all something we needed. Even if APril does and never did exsist, look at all the good she did, all the praise she brought into our lives and all the prayers she shared. She linked so many others together through His will wednesdays..people who may not have found eachother without her blog. So why do we sit back and judge her, yes maybe she is " Bearing false witness" which in itself is a sin...but who are we to do anything less then jesus did when he wlaked upon MAry being stoned by the towns people.....I think we need to focus more on the positive and on Jesus's words.." let he who hath never sined beofor cast thy first stone"...
So maybe this lil girl doesnt exsist and maybe this woman has toyed with our emotions and maybe we have been praying for a baby that doesnt exsist, and yes maybe its harder for those who have lost a baby..no doubt. But I would like to think it would almost be a RELIEF if this turned out to be a fake, then at least someone who has lost a infant or child would know that someone else would not be feelinhg that overwhelming pain and loss. Thats just my opinion. Maybe i m too forgiving, I dont know, but I do know I am not ready to turn my back on this woman who obviously needs prayers..no matter how you look at it. Who am I to say anything more..then God bless you sister and help to heal you mind and heart. Agian..just my opinion.

Sunday, June 7, 2009

BIRTHDAY BLOG

OK so pics will have to wait untill tomorrow...MY BIRTHDAY BLOG

Fustrating...where to God?

FUSTRATING 1 :
I tookthe kids to Johns Incredible pizza yesterday, actually my sister in law paid but we all went ....anyways..its very fusterating to me to try and be the " bigger" person...to be the Christian..one of the bunch...to not judge or say something mean or retalitory-is that even a word?..Anyways, a lil backround, my family has always treated me differently, I think partially due tothe fact that I was always sick as a kid...
I think my bro and sister actually resent me for being sick...They both treat me like crap, even as an adult..they both act as if they are better then me and they say mean and hateful things all the time..to the point where i dont even want to be a part of their lives,,,,,,and yet..I love my nieces and nephews.So thats where the " shut up and take it" comes in..I feel like if i want tohave anything to do with my nieces and nephews, I have to sit back and take their abusive words.
My niece has Cystic Fibrosis and we dont know how long she will be with us..we are praying for her and hope her health will continue to get better. but still its the not know-ing that is hard. I am sure she will lead a full and happy life, i just pray my sister will include me in her life and yet i am affraid if i say one thing wrong....thats it shes outta my life, just like my brother did with my nephew...
WHen did family become so disposable?
FUSTRATING

FUSTRATING 2:
I cannot figure out what it is God has planned for me...I will be 32 years old tomorrow and I have done nothing with my life, What mark will I leave what legacey will i leave my children? I cant work because of the pain and other issues my tumors cause...I have considered writting childrens books baout neurofibromatosis or cystic fibrosis or even just general medical issues kids have to go through, thought about making a photography book about autism, thought about taking photography classes and becoming a photographer for NILMDTS, ..goodness so many things that i htink im being called to do..but do not know for sure...i dont think i have enough confidence in myself to do anything....I want to but just dont....FUSTRATING

FUSTRATING3
for some reason I have been tortuing myself with these really sad blogs about these amazing wemen who deliver beautiful babies that go to hevean- way before what should be their time...I mean these wemen are incredible and i cant even imagine the pain they are going through...I think God may have in a way brought me to them for some reason, but i cant figure out why? I at some times think they were brought to me..to make me appreciate my kids more, but that in itself is so hard and difficult...because now i feel guilty every time i feel like " i need a break" I think of these wemen who would kill to have a screaming child in their arms or a temper tantrum throwing 6 year old....and yet here i am complaining about it..I love my kids so much....would not trade them for the world..i have to at times rememebr i am a single mom with vitually no support who herself has medical issues and a son with major medical/mental issues and i am doing the best i can with what god has given me.......and yet its so FUSTRATING

so while i pray for the healing hearts of these wemen who have lost their children, i also pray that god shows me what path i am suppose to take here and why he has brought me where he has....

Where to know God?

another post here in a few / more pics of the kids

Thursday, June 4, 2009

blog

I started this blog as more of just a diary..its kinda slowly turned into more then that...if you are reading this you will see i dont pay a whole lot of attention to grammer or punctuation, sometimes my spelling is even poor..its not that i dont care...I just have a really hard time sometimes, and I feel like i am being more real if i just type what i feel, when i feel it. Most of the time I do go throug it, but maybe it is that i just dont care sometimes...Uggh i dont know..I am also very moody..I know im depressed and will prob at times seem very bi-polar in my blogging..happy one min- sad the next- reflective then angry...like i said its kinda mor eof a diary then anything so im not to worried about how i look to others as far as the blog is concerned. I love the prayers and input advice and well wishes..they are so inspiring and I appreciate it. Thank you

Neurofibromatosis

NF
Neurofibromatosis is a neurocutaneous syndrome passed down through the parents' genes, and it affects the brain, spinal cord, nerves, skin, and other systems in the body.
Neurofibromatosis is defined by tumors, called neurofibromas, that grow along nerves in the body, or on or under the skin. As the tumors increase in size, they can press on vital areas of the body, causing problems in the way the body functions.
Neurofibromas often first appear in childhood, especially during puberty. The first noticeable sign is almost always the presence of brown cafĂ© au lait spots. These distinctive spots don't hurt or itch and never progress to anything more serious than spots. They can be found anywhere on the body, though not usually on the face. Tiny ones — freckles — may be seen under the arms or in the groin area.
Many neurofibromas can be removed. Although usually benign (noncancerous), an estimated 3%-5% become cancerous.
Of the two types of neurofibromatosis — NF1 and NF2 — NF1 is more common, occurring in 1 of every 4,000 births and affecting an estimated 100,000 Americans. It is also known as von Recklinghausen disease.
NF2 is characterized by the presence of bilateral acoustic neurofibroma-like tumors and is rarer, seen in 1 in 50,000 births. People with NF2 usually develop benign tumors on the nerves in their ears, causing hearing loss, eventual deafness, and problems with balance.
The severity of both types of neurofibromatosis varies greatly. In families where more than one person has NF, it can present with different physical signs and complications for each person. At diagnosis, it isn't possible to know right away whether a case will be mild or lead to severe complications


ME
I have NF1 with some characteristics of NF2. I have a very large plexiform tumor : the doctors decribed it as thousands of lil grapes on a blood vien all over the place- this tumor is very large and covers basiclly my entire left side of my skull. its painful and I have severe Migranes, many times having to go to ER for relief. Its so hard to contantly hear " theres nothing we can do"...EVEn the world top Neurosurgeon-the one who seperated the famous twins conjoined at he head...not even he could help me. The pain clinic recently turned me away..telling me there was nothing they could do to help. UGHH Ive tried all my life to not feel sorry for myself and to try and be strong..but lately..Im just feeling beat down.

Tuesday, June 2, 2009

So tired

of being alone. Am i destined to be alone the rest of my life? a single mom, on a path for jesus but alone? id ont even know what toblog right now...just needed a min to vent. I feel so selfish blogging about me and what I want or need..when so many others out there need so much more. I just want to share the jopy of the lord jesus christ with someone who will grow with me in my journey...is that so wrong? so many mothers are holding their dying children as we speak, and I am praying for a husband...pretty selfish it seems and yet i feel comppelled to pray and to ask..when lord when will it be my turn? when will I have that love you describe in the words we all read? when?

so its been a few hours since i started this blog tonight and I have been reflecting and praying.I wonder if i am not good enough sometimes to be walking this path with jesus...I know it is prob the devil talkin in my heart making me feel this way, but then agian i just dont know sometimes. gosh i prob sound so confused. The thing is, I dont understand why Jesus just cant be enough. why cant he be enough for me? I know he did not intend us to be alone right I mean hemade Adam and Eve...Ughh

I will continue to pray and hope that, no..know that God has a plan for me and I will someday find the peace I need. It may or may not be in the arms of another, but it will be as my fellow blooger friend says " his will" I pray "his will" will bring me peace.